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A few weeks ago, I went to an audiology appointment I’d been avoiding for over a year. Internally, I knew I could no longer hear as well as those around me. But my fear of learning this from a doctor kept me from facing the truth. Sure enough, I was told I have sensorineural hearing loss; hearing loss so severe, it’s usually seen only in those in their late 60’s (I just turned 39); and my hearing loss will worsen as times ticks on, necessitating repeated visits to an audiologist – yet another specialist to work into my already overloaded medical schedule! The good news, or so I was informed that day by the doctor, is that I need hearing aids which will allow me to hear typically once again.

But I did not see any of this as good news. It devastated me. I began to cry thinking about having to deal with another regression of my body. I sobbed realizing I will need one more medical device just to have a ‘normal’ day. Tears fell as I contemplated yet another thing that was “wrong” with my body; how “broken” I am; how tired I am with all the diagnoses, medical equipment, modifications, etc. Quite simply, I suddenly missed my old life – before age 28 when my body worked like nearly everyone else’s; where simple, daily tasks weren’t challenging; where intense planning didn’t go into having a simple dinner out with friends or going to school. I was glued to a pity pot and couldn’t seem to stand up and flush!

Two things happened that precipitated my turn around in attitude. The first was a comment the doctor made on my way out. As I wiped away the last of my tears and struggled to get my brave face on for those in the waiting room, he said, “You know, hearing aids are just like your glasses or your powerchair. You don’t realize you need them and may not even want them, but they’ll be life-changing and life-enhancing.” This statement planted a seed for me to ponder later.

The other thing to occur that helped me change my perspective was a post from a friend in the disability community. It was about accepting our disabilities and all that we gain from doing so. It finally clicked in me that everything was fine. I’m not “broken;” nothing’s “wrong” with me; I’m wonderful the way I am with my splints, powerchair, Service Dog and soon, my hearing aids. I recalled how I felt at the appointment when I was age 35 – I’d gone in to discuss a prescription for a new manual wheelchair, but my doctor had decided I needed to be realistic and get measured for a powerchair instead. I remember feeling devastated. I worried that I’d look like an elderly person in a powerchair (you know, because that’s the worst possible thing! Ha-ha!). I didn’t want the powerchair but when I finally got it delivered and rolled around in it, my eyes were open to how freeing it was. It’s given me more independence and the ability to better keep up with my young child. I’ve accepted that I need my chair to live in the best way possible and to obtain movement through the world in which I travel daily as an active member of my community. And, speaking of community, I’ll have a new community within the disability community to go to for support, encouragement, ideas, and more and perhaps someday I’ll be able to help another HoH (Hard of Hearing) person.

I messaged my friend, Lindsey, thanking her for her post and telling her about my appointment. It’s something I’ve still not shared publicly even though the shame and devastation are gone. Lindsey’s always encouraged me, supported me and quite frankly, as a fellow wheelchair user, she inspires me. She was Ms. Wheelchair Tennessee 2018 and I enjoyed following her journey. She runs a website and vlog on YouTube which I urge you to check out.

Being HoH isn’t the worst thing that can happen to me. I’ve certainly dealt with worse already. I accept my need for hearing aids and am looking forward to finding out what I’ve been missing all this time. Like my powerchair and Service Dog, hearing aids will open doors for me in the areas of independence, dignity, freedom and give me the ability to hear that my disability has robbed me of.

Like many others, I grew up watching sitcoms on television that depicted joyful, loving families who’d sit down together for meals that were often cooked by the mother. I had no idea that I was learning anything; I simply watched for my enjoyment. But, I was learning life-lessons about family dynamics, familial norms and expectations of motherhood.

Now that I’m a mom, I realize that these lessons learned subconsciously have caused me quite a bit of discomfort in myself as well as guilt and shame about my own ability (read: inability) to perform the expected duties of a mother. Due to my physical disability, my household doesn’t follow societal ‘norms.’ We have our own ‘normal.’ But although I’m aware of that, I nonetheless experience undeserved and unnecessary guilt because I’ve inadvertently placed expectations on myself as a parent; expectations I’m not able to live up to.

photo credit: iStock/CSA-Archive

Most recently, as my body has deteriorated, I’ve stopped being able to cook in our inaccessible kitchen. I started ordering deliveries from pizza places and delicatessens and we began to pick up more and more fast food. I knew my young child was no longer getting healthy meals and therefore was not consuming the necessary nutrients she needed for her holistic growth. But I felt helpless to change the situation. Until one evening, as I watched her eating yet another slice of pizza, I thought, “It’s my responsibility as her mom to make sure she eats healthy. If I can’t cook myself, then it’s still my responsibility to find a way for her to be healthy.”

The next day, I went about a month-long process of info-gathering. I searched for businesses that would deliver healthy, pre-cooked meals to our home. I finally narrowed the list down to two places, one national and one local. My daughter and I decided to try the local company first. We ordered only 2 meals, so we could try them and decide if we liked the food. We did!! So that week, I placed an order for a week’s worth of dinners to be delivered the following Monday.

When Monday dawned, I felt excited but also extremely nervous. I assumed that when the meals came, and I placed them in our fridge, I’d feel guilty that I wasn’t the one who provided them. But, the food came, and I placed the containers in our refrigerator and sat there staring into it at the shelf full of correctly-proportioned, healthy meals. I realized, maybe I wasn’t the one who cooked all this, but I am the one who provided it! I’m the one who did all the research into the various companies who offer food delivery services. I’m the one who ordered the meals. I fulfilled my responsibility as a mom to provide my daughter with healthy food!!

Many times, for me, it’s all about my perspective. When I find myself feeling negative about a situation, there’s nearly always a way to turn my attention to other aspects of it and see the positive side. I don’t need to follow societal norms! I’m not obligated to live up to anyone’s expectations! My parenting shouldn’t be judged based on how I get things done but rather that I do! My daughter and I have been eating delicious, healthy meals now for 3 weeks and I’m proud of myself for getting this done, for making the changes necessary to ensure that her needs are met.

*If you’d like a list of companies that deliver healthy, proportioned, precooked meals, feel free to email me at the address listed on this site.*

If you are a parent, you know the feeling of pride that comes from watching your child(ren) perform in a school play or sing at an event; you’ve experienced the joy that occurs when you visit the classroom or engage in school activities with your child(ren). But, imagine if you had to stay outside the classroom door or couldn’t make it into the auditorium to watch the show. Imagine the feelings of guilt, sadness and separation you’d feel if you couldn’t participate the way every other parent was able to participate. Unfortunately, this happens more than you may think. When a parent uses a wheelchair, or doesn’t have the ability to climb stairs, there’s often no choice but for them to miss out on various aspects and events in their child(ren)’s life. For no other reason than structural inaccessibility, some disabled parents are placed in the awkward position of not being present in their child(ren)’s affairs. I’ve had to hear about my daughter’s classroom activities from other parents and it left me feeling embarrassed, guilt-ridden and upset. I’ve heard other ‘wheelie’ moms express anger, frustration, grief and humiliation at having to miss out on things because they couldn’t gain access into the venue.

When my daughter first started kindergarten at her new school, there were plenty of handicap parking spots available, but none were van accessible. The principal and school security officer both told me to simply make my own spot or take up 2 of the handicap spaces. So, for the first few months of school, that’s what I did. The school is extremely wheelchair accessible once inside – the entire layout of the lower and upper floors flows together via ramps and an elevator is in place. I’m able to go anywhere inside the school I need to go. But there was only one entrance that was level for my power chair to go through and it’s located at the main entrance, which is two schools down from the elementary school (the school itself contains preschool through high school). I would try my best to park near the main entrance whenever I arrived for school activities and then make my way through the high school and middle school to the elementary wing. I was able to attend all her class parties, her performances and the like. It was wonderful, and I had no complaints. I was simply happy to be able to go and be!

During the 3rd month of fall semester, the principal told me they’d put in a van spot for me right by the elementary school! I was excited and felt quite fortunate that the school had made accommodations for me. The only problem was that once I parked, I still had to trek up to the main entrance to get into the school. They had not realized there wasn’t a way into the elementary school for me. I told them it was no big deal (and this was true but on rainy days and as the weather got colder, it wasn’t the most ideal).

Right before Christmas break, I arrived one afternoon to pick up my daughter and a couple of faculty members approached me. They asked if I’d seen what the principal had made me. Apparently, the principal had decided not to waste time waiting for approval and necessary funds from the budget – he’d spent that day building me a ramp into the elementary school!! I was moved to tears! It sent me the message that I was just as important as the able-bodied parents; that I was wanted and needed there; that I was respected. They recognized my need to be with my child. My daughter’s school made it possible for me to have the same access as the other parents. But, it was what the Headmaster said to me that really meant a lot: he told me yes, it was done for me, but that it would be there for other parents like me in the future.

So, it seems that while they have given me two huge gifts in the form of making the building more accessible, I in return have given them a gift – the gift of awareness. I’m so thankful for all of this!! Using a wheelchair should never prevent me from being present in my daughter’s life but the reality is that it has. And there will be more times in the future that it will. But, as society becomes more aware of the existence of parents with special needs and is educated about the need for accommodations, disabled parents will gain equal access in places such as schools, gyms, auditoriums, etc. There will be a day when we no longer experience our child(ren)’s lives vicariously but are fully engaged as we are meant to be.

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The Modified Mama is Lyllyan Blare, a resident of the state of Tennessee, USA. To find out more about her and her journey, click on her picture to the left!
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